BUTTERFLIES KEEP FLYING – A Guest Post about Epidermolysis Bullosa…

Posted on by Chris The Story Reading Ape

Hey Everyone! 

Like all of you, I’m always so appreciative of Chris and his willingness to let us share our book news, tips etc. So here’s my latest…

Butterflies! Spring and summer make for the perfect time of year to talk butterflies, but my new book offers a metaphorical twist on the annual topic. BUTTERFLIES KEEP FLYING follows a gentle butterfly who, tired of being small and fragile, imagines what life might be like if she could be a different creature, one who’s bigger, stronger, and doesn’t fly all of the time. Eventually, she reminds herself that her delicate wings play an important role in helping her face life’s challenges. My friend’s daughter, Ella, who is a “butterfly child”, inspired the character.

TSL BNAliEllaSara

Ella has a rare skin disease called Epidermolyis Bullosa, EB. Often called the “butterfly children,” boys and girls living with EB have extremely sensitive skin that blisters and tears with friction. They are often in pain, yet they get up each day and keep flying. For years, I marveled at Ella’s ability to “fly” despite so much adversity. I longed for a way to celebrate her fighting spirit and raise awareness. I researched butterflies. I asked Ella questions. I wrote and wrote and wrote, until one day I had a story, BUTTERFLIES KEEP FLYING.  

Ella signing

I know for many writers, everything we create becomes a part of us and spurs us along as pieces of ourselves interlace with every character, scene, and word. But I have to say, this book in particular truly holds a huge chunk of my heart and I’m hoping it does some good out there. Actually in this picture, you can see one good thing that has come of it already. This is Ella at our book launch. She signed dozens of books and felt like a celebrity that day.

Butterfly Book_Cover

Each year I plan to donate a portion of the book profits to debra of America, a nonprofit group serving EB families. I’m including a link to that organization and to a vlog post by a friend of mine from my TV news days, Jeff Chirico. The interview offers an informative glimpse at the book and this terrible disease. 

Thanks for letting me share!  

Debra of America

Barnes & Noble

Amazon:

UK – USA

22 thoughts on “BUTTERFLIES KEEP FLYING – A Guest Post about Epidermolysis Bullosa…”

  2. Reblogged this on cicampbellblog and commented:
    Today’s guest with the Story Reading Ape is Ali Pfautz who was inspired to write her wonderfully illustrated book Butterflies Keep Flying by her friend’s daughter Ella’s condition. Do head over and read the post and also find out more about ‘Butterfly Children’ who have the courage to face the world each day with the crippling skin disease epidermolysis bullosa. Inspiring little girl..

    Liked by 1 person

    Reply

  4. Reblogged this on Smorgasbord – Variety is the spice of life and commented:
    Today’s guest with the Story Reading Ape is Ali Pfautz who was inspired to write her wonderfully illustrated book Butterflies Keep Flying by her friend’s daughter Ella’s condition. Do head over and read the post and also find out more about ‘Butterfly Children’ who have the courage to face the world each day with the crippling skin disease epidermolysis bullosa. Inspiring little girl..

    Liked by 2 people

    Reply
  9. Pingback: BUTTERFLIES KEEP FLYING – A Guest Post about Epidermolysis Bullosa… | Annette Rochelle Aben

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